Too young for PMR

[Jenlouh]

Just seen the rheumatologist Dr Cardy at Worcester Royal for the first time since my GP diagnosed PMR. She believes I am too young to have the condition and says my symptoms match fibromyalgia and possibly some other disorder such as rheumatoid arthritis. She has now reduced my prednisalone to 15mg for 2 weeks then wants me to go to 10mg for 2 weeks, then 5mg then 0. I'm terrified I will go back to square one again when I was hoping I would get better rather than go back. I Just feel a bit helpless now.

[PMRpro Ambassador]

I think I did warn you that might be the case at your age - there are a lot of rheumies who don't believe it can happen in under 50s although I do know a few who are happy enough that it doesn't recognise the celebrations for your 50th birthday!

That is exactly how the rheumy I saw started me off - I was going to the USA and could barely move. He wanted it to be ANYTHING, just not PMR. I had 2 weeks at each dose, stop. Within 6 hours of the first dose of 15mg I was almost back to normal movement, 6 hours after missing the first 5mg dose I was in bed, in tears, in agony. A different GP from my usual one agreed the clinical picture and response to pred made it look pretty likely it could be PMR and was happy to continue pred.

One top PMR rheumy co-authored a paper about management of PMR and GCA where he used a "sandwich week" of pred as a confirmation of his suspicions: one week vit C, one week 15mg pred, one week vit C (the vit C does nothing but is a tablet as a placebo control). The symptoms should ease in that week of pred, returning over a similar time scale when you stop. Others dispute this way of weeding out PMR from other things but it is one piece in the jigsaw.

rcpe.ac.uk/sites/default/fi...

Other forms of inflammatory arthritis don't respond so typically - there is a graph where they improve a bit but not much. PMR usually does it fairly dramatically. Fibromyalgia won't respond to pred - it isn't an inflammatory disorder, there is no reason for pred to make a difference. So if the pain she thinks is fibro is away at present and returns with lowered pred it isn't likely to be fibro. My own personal opinion is that they don't see PMR in under 50s because they refuse to look for it - don't therefore see it and if they do, they deny it.

Wait and see how you get on with the pred reduction - but take that link I've given you to your GP and discuss it with them. I assume the rheumy is doing other tests? They may show something - or they may not. Are you in a position to go to see a rheumy elsewhere? There are rheumies who don't immediately rule out PMR on the basis of being under 50 - but they are still exceptions.

[Jenlouh in reply to PMRpro]

Yes you did warn me and I half expected it, but did hope she wouldn't be so ready to dismiss it. I wouldn't be able to see a different rheumatologist I don't think and unfortunately not in the position to pay privately. The difference from being on the Pred has given me much improvement in comparison to where I was and I just don't want to go back to where I was. However, I know I've got to try what she suggests. Thankyou for the link you've sent. I will check it out and get an appointment with my doctor.

[DorsetLady PMRGCAuk volunteer]

Oh dear,

Sorry - wrong, wrong, wrong! Not too young, may be unusual!

As you rightly say, her reduction plan is probably a recipe for disaster, but I guess you have to comply - with the first reduction anyway. Try reducing to 15mg, but I would make an appointment with your own GP to coincide with the end of the 2 weeks she's told you to stay on that dose - if you can. By then you should have some idea of effect the drop has had, and you can discuss with GP. If you're in pain, perhaps he could interven, after all he diagnosed PMR initially. If everything is okay (?) you can always cancel that appointment and carry on with reductions.

I think you have to try what she wants, but it's always useful to have a GP on your side.

Good luck.

[Jenlouh in reply to DorsetLady]

Thankyou. Yes I must try what they say. My doctor has been really supportive so I want to keep him informed as well. They've taken more bloods today as well to check for other things. I just don't see why the Pred would have made such a difference if it was fibromyalgia and not PMR, as Fibro isn't an inflammatory condition. She did say though she thinks there could be another inflammatory condition involved. Who knows, time will tell. Thanks for your support x

[DorsetLady PMRGCAuk volunteer in reply to Jenlouh]

Trouble is, Pred has a tendency to mask other pains as well, so sometimes the only way to find other complaints is to come off of it.

Unfortunately, that's not easy or painless!

[piglette in reply to Jenlouh]

I am so sorry you have come across one of the rheumies who read that PMR happens in the over 50s and takes it as gospel. With fibro the pred would not have had an inkling of difference to the pain, so she can be sure you have something else other than fibro. Are you taking any other pain killers? As PMRPro suggests you can try the reduction suggested, but as soon as you get any pain STOP and go back to the old dose. Then contact your GP, if you have not already done so, and shout very loudly that you need pred. Have you got information on your blood tests? I always ask for a copy, so at least I can monitor what is going on.

[Jenlouh in reply to piglette]

Hi there, no I don't know what my blood results were other than my inflammation was high and gone down considerably on prednisalone. I will ask the dr for a copy. I am on 20mg of zomorph twice a day and am on Gabapentin for the sciatica.

[piglette in reply to Jenlouh]

Zomorph should help if it is fybro. If you cut down on the pred and things are still OK it may be fybro of course. I have had sciatica recently and could not find any pain killers that really helped, I did not try Gabapentin though. In the end I went to a physio which seemed to do the trick, thank goodness.

It will be interesting to see what your blood results are. My GP said my CRP had gone down and on checking I found it had gone up. When I told her she said it was only a small amount, I said I thought a sixty per cent rise was quite a lot, her reply was 'Well if you want to look at it like that'!

[rogerthegov]

You are supposed to get PMR when ladies are over 50 !! Don't know about us men but don't drop the Pred that quickly keep it at abut 10mg for a year that's according to the Dr Samy at Weston and BRI Bristol.

[Polywotsit PMRGCAuk team member]

Jenlouh - trust your rheumatologist. She knows a lot more about other things it might be than we do! Don't settle for one opinion either - get a second opinion.